Popular on RARE Portal

My communities
Β View Only
Discussion Thread View

πŸŽ™πŸŽ§ Raising Rare reflects on GG Patient Advocacy Summit - podcast

  • 1.  πŸŽ™πŸŽ§ Raising Rare reflects on GG Patient Advocacy Summit - podcast

    CONNECTED
    WITH
    OTHERS
    Posted 26 days ago
    πŸŽ™πŸŽ§  Raising Rare podcast has two episodes from our 2022 Summit. #ggsummit #podcast

    "From what they had for lunch to some of Kevin's most meaningful moments. In this different episode, Sanath and Brittany ask Kevin about his experience at the 2022 Global Genes Patient Advocacy Summit.  Kevin recorded the episode on location from the Town & Country resort in San Diego.

    This year's Summit was the first in-person one since Covid. The experience of being back together was powerful. There were a lot of new people in attendance. And we got to reconnect with old friends. The tone of the conference was much more patient- and caregiver-centered than before. Sessions about mental health, relationships, and managing life with Rare Disease.

    We hope this fun discussion gives you a feel for the power of the Global Genes Patient Advocacy Summit. More importantly, we hope is encourages you to start making your plans to be there in 2024."

    Episode 11: On the Ground at Global Genes 2022
    Episode 10: Casey McPherson: Making Music and Drugs for Rare Disease

    "We spoke to Casey McPherson during the recent Global Genes Patient Advocacy Summit in San Diego. Casey's daughter Rose has HNRNPH2 (www.tocurearose.org ) He has made the extraordinary step of starting his own lab. Even more wonderful is that this lab is committed to providing a more efficient, accessible lab capability to other parents looking to find a treatment for their kids. This lab has become www.everlum.bio that offers preclinical services without the bureaucratic hurdles and delays."


    ​​

    ------------------------------
    Daniel DeFabio

    Global Genes
    Director of community engagement
    ------------------------------